Night again was hard. Cameron and I slept in shifts, taking care of two feedings at a time, and then going upstairs to try to sleep. Neither one of us slept the whole time as we should have. We knew we needed to, but we just had to keep checking in with each other, making sure everything was alright! We of course had our nightly converstion with Terri, our nurse. I always needed to call her sometime after midnight, and I felt so bad, but she was so great, helping us through each and every scare we had. Then morning came, and it was a beautiful Sunday! Cameron took the kids outside to play and he took care of the yardwork, while Elijah and I hung out inside. Dr. Reagan came around 9am, and said that we could take him to church if we wanted, but we didn't get ourselves ready in time. I would have liked to take him, I know how much everyone there wanted to put a face to their prayers. As he was leaving, my grandparents came to see their 6th great-grandchild. Today we also had visitors from church. Cameron and I needed to get the kids lunch as well as eat something ourselves, so we let our friend give Elijah his tube feeding. When he should have been sleeping, because the feeding was almost over, he started getting upset and crying. This was never a good thing, because he wasn't supposed to cry. It took too much energy, and was not good for him. I went over to see what was wrong, and found that his oxygen had come out. We quickly put it back in and I took out his feeding tube to allow as much oxygen as possible to get to him. We then just held him and prayed over him. Soon, he came back to his normal coloring. We found out later, that my Dad's parents and sisters stayed after at their church, so a large group could pray for him, specifically. They told us that at one point their pastor stood up and yelled, "breathe, Elijah, BREATHE!". That was at the EXACT time that he was without oxygen! What a testimony to see the Holy Spirit at work! Well, now Elijah was breathing again, but he didn't have his feeding tube in! We called Dr. Reagan, and he wanted us to try to get it in, since we were taught how at the hospital. We tried a few times, but it just wasn't going in, so he came and put a new tube in, gave him his "as needed" drugs, then Elijah then slept, and Lizzie and Dylan went to a birthday party for their friend, Jase. At Church, we have an "inside joke" with our Pastor, who is a Miami Dolphins fan. Elijah got to see the Bills beat the Dolphins today, and that always makes for a good day!! Night came again, and stress was high. I really did not like the night.
Sunday, September 17th 2006
(bib says, "I love my Grandma)
Today was not good. We of course called Hospice regularly. Elijah's oxygen tubes started hissing, he had quite a few episodes of labored breathing. We were getting worn out, and even though we appreciated all the visitors, we weren't staying on top of medication, feedings, and pumping like we wanted. Dr. Reagan had the day off, so we called the Hospice nurses over a LOT! We called our pastor to announce at Bible study that night that we needed people to call ahead of time if they wanted to come over, and that we really needed some time alone. He needed to get the Lasix again at 5pm, and Dr. Reagan decided it was time to make the Lasix a regular drug, not "as needed" anymore. A nurse friend of ours called from the doctor's office, and said we could bring him in to get weighed. A photographer from church came over and took some professional pictures of Elijah, and then we got him set up in his car seat with the portable oxygen, and my mom and I took him to get weighed. He didn't lose any weight in the hospital, which I thought was amazing, but when he was weighed tonight, he was down to 6 pounds 6 ounces. Our friend Jodi is a nurse in a larger hospital that has a NICU, so she came over with some tips from those nurses, as well as some better tape for his feeding tube. He had calmed so much, that he started to roll! He just kept pulling himself over onto his right side. We will never know if he was doing this for a medical reason or not, but it was very entertaining! Dylan kept singing the Wiggles song, "rolling down the sandhills!" Lizzie layed beside him and rubbed his ankle until she fell asleep on the floor! This was a very special night for us. Elijah seemed to love his car seat earlier, so that night, we decided to try and let him sleep in it. We talked to the nurse at 8pm, and didn't need to call her until 6am!
Monday, September 18th 2006
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